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I love to teach.  What I have been taught/practiced in my life/shared with  others in regards to emotional/relational needs has been a huge turning point in my life.  It is so rewarding to post something and have one, even just one person comment and say, “wow, that makes total sense.”  I do know as well that the number of folks who comment here or on various social media sites where this is shared is in no way proportionate with the number of people who read the posts (which thankfully continues to grow and has a very steady 65% returning visits rate…thank you google analytics).  That being said, through some conversations that I have had recently, I feel lead to just share with you on overall “State of Trey” update.  Perhaps I should call it, “Trey for Dummies”…no, that could (very easily) be taken the wrong way.  Perhaps it is a “If you haven’t been around for the long haul get you up to speed in regards to Trey” update.  If you have been around feel free to skip to the last section (or do whatever you want, it’s your time).  Either way and as it is…

The Beginning

Trey was diagnosed with Neuroblastoma on December 24, 2010.  He was given a 65% chance of being alive and cancer free 5 years from that time.  He immediately began an aggressive treatment program that included chemo, surgeries, stem cell harvesting, various scans, and many many nights in the hospital.  He quickly became known as “The YoungWarrior.”  Any chance he got to separate himself from other kids with cancer, in regards to his demeanor/attitude/physical reactions, he took them and excelled.  Tragically, the treatment failed to stop the bulk of his cancer.  He underwent a “Hail Mary” last resort surgery to get the cancer out in August of 2011.  During that surgery he had lost one of his kidneys (we knew that he would) and his aorta (which the cancer was and is wrapped around along with three main arteries) wouldn’t hold any stitches and he almost bled out on the table.  Only his “YoungWarrior” spirit (the anesthesiologist actually said, “Your little warrior kept with me (pumping him full of fluids and meds) every step of the way…I’ve never seen anything like it.  I never had to back off.”) kept him from losing his other kidney, other vital organs, and even paralysis.  All of these things were very possible threats when his aorta bled like it did before they could fix it with a gortex patch and close him up.  Sadly, they couldn’t/didn’t get the cancer out.

The Middle Years

Trey began a series of outpatient chemo’s (and similar meds) after his surgery.  They were aimed at keeping the cancer from spreading and were very successful at doing so.  He participated in a trial med that had never been given to a child in PA before.  He remained in that study for just over 18 months and the cancer spread very little.  During that time there were some setbacks (like a collapsed lung) but he charged forward or at least held steady each step of the way.  The hardest part for us was shortly after the collapsed lung he had to go on a “zero fat” diet.  Not low fat.  Zero.  There isn’t much that has zero…none, not a little, not negligible, NO fat.  It was terrible.  He was so hungry and became very skinny.  Actually, except for the diagnosis and the surgery failing, it was the hardest time for Rachel and myself.  It should be noted that not in the beginning, not then, and not now does Trey even know what cancer is, that he has it, or what his ultimate diagnosis is.

Out of Treatment

As of October 2013 Trey was out of treatment.  One treatment option did emerge and that was a “super radiation” infusion that would be held in Philadelphia.  Fearing the side effects and not necessarily being comfortable with the possible impact on Rachel (who would be in the room with him) we tabled making a decision on doing it and instead took a great family trip to Disney thanks to the generosity of hundreds of people (many of you, many we have never met).  Shortly after we returned from an unbelievably good time Trey took a turn for the worse.  His sleep deteriorated and he became quite irrational during any bed or nap time.  These couple of weeks were terrible and terribly exhausting for Rachel and myself.  We never slept more than a few hours at a time and were very much at a loss.  We decided (actually before we even left for Disney) that we would get the treatment in Philly.  As a precursor to that treatment he had several scans which showed that the cancer had grown and spread “significantly.”  We also figured out (through our Oncologist) that the spreading of the cancer had caused some things to move around in his belly area which had caused pain and an overall lack of homeostasis (ability to feel “right”).  Thus, we gave him Motrin and even some Oxycodone.  Like magic, if he was on pain meds he was fine.  If he was not, he wasn’t.  He and Rachel went to Philly over Memorial Day weekend for the intense radiation therapy.

Here We Are Now. 

Since Trey has been back he has seemed to be significantly better than just before he left but not where he was up to and including Disney.  We almost never give him pain meds and he is sleeping,  mostly, through the night.  He is VERY skinny as he did not eat much prior to going to Philly and did not eat at all while there.  Last week he ate some, and this week he is eating a ton.  Just today his doctor prescribed for him a med that will increase his appetite and enable him to keep more of the nutrients.  His energy isn’t top notch but he is, over the past few days, starting to play more and more.  Generally, of the kids who have had the treatment in Philly 1/3 see no impact (worst case), 1/3 the cancer is stunted (better), and 1/3 see some minor shrinkage of the disease (best case scenario).  It is not, nor is there, a “cure” treatment known to anyone at this point of his journey with cancer.  If he experiences either of the two positive outcomes he can go back and do it again in a couple of months until it doesn’t help anymore.  When Rachel asked the doctor in Philly why it would work and then stop working he replied, “That’s the evil of neuroblastoma…we don’t know.  When it grows, it grows.”

So there you go.  You are up to speed.  He’s fine, but he isn’t.  He’s doing better but isn’t all better.  We have another day…for now, much as we know.  Then again, that’s true for all of us.  Oops, I’m starting to teach again.  Thanks for caring and wanting to know.

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